
## **Empowerment | Advocacy | Research** 

**ANNUAL REPORT Our first year of impact.** 

13 February 2024 to 5 April 2025 

**Oncogene Cancer Research Charity no. 1206988** 



## 02 

## **TABLE OF** CONTENTS 

|**Co-founders’ letter**|03|
|---|---|
|**Snapshot highlights**|04|
|**Our mission**|05|
|**Who we are**|06|
|**FY24/25 Accomplishments**|07-08|
|**Collaborating with others**|09|
|**Fundraising and expenditures**|09|
|**Community stories**|10|
|**Structure, governance and**<br>**management**|11|
|**Reference & details**|11|
|**Name of the charity trustees**<br>**that managed the charity**|12|
|**Declarations**|12|






03 

## **CO-FOUNDERS’** LETTER 

## **Welcome to our first Trustees’ Report!** 


We set up Oncogene Cancer Research (OCR) in February 2024 because we saw first-hand that far too many people just don't get enough: enough time, enough information, enough support. We saw diagnoses missed, delayed or misunderstood, and a complicated system. Many people impacted are left searching for answers, expertise and hope in a space where research and understanding remain limited. 

We founded the charity as patients and families driven by a core belief: Research saves lives. This work is personal. We understand the fear that follows a diagnosis, the resilience it demands, and the determination it can ignite. From the outset, our purpose has been clear: Help people live longer and live better by empowering patients with trusted information; ensure the patient voice is heard in research and clinical decision making, and accelerate progress through research, collaboration and innovation. 

In our first financial year, we raised just under £59,000 with people who share our belief in the power of research. This support has laid the foundation for what comes next: our first research seed grants. This will be  the beginning of a future shaped by hope, progress and possibility. 

Real change does not happen in isolation. It happens when patients, families, researchers and clinicians work together, learning from one another and pushing for better outcomes. We welcome your support — whether through sharing your time, your expertise, your story or your resources — as we continue to build a charity driven by lived experience, collaboration and the belief that better outcomes are possible. 

Yvonne Diaz   Jan Clark 




## 04 

## **SNAPSHOT** HIGHLIGHTS 

## **Established a strong foundation in our first year** 


**Founded Raised just under Feb 600+ £59k** members **2024** over our foundation financial year 

**Building strong connections with industry and  researchers** _Over the financial year period_ 




**Advisory Board engagements** to bring the patient voice to industry 

## **Industry & patient conferences** 

**Speaking engagements** influencing research, industry and supporting patients 

attended including BTOG, ASCO, WCLC & ESMO 


## **First campaigns** 

Our cardiotoxicity series encouraged patients to ask about cardiovascular risk, and we partnered with YLCI & EGFR Resisters on a global LCAM24  campaign 

## **Patient stories** 

Our Instagram carousels & patient stories became a hallmark of how we build and empower our community 

**Strong social following** Connecting, informing & inspiring patients, care partners, along with the medical & research community 



## **OUR** MISSION 

## 05 


**To improve the life expectancy and quality of life of people living with oncogene-driven cancers** 

## **WHAT WE DO** 

**Empower patients** Education around shared decision making, demystifying research, resilience, community 

**Champion Accelerate advocacy research** From self advocacy to Funding, informing and research advocacy advocating for clinical trials and research 

Oncogene Cancer Research was created because people living with oncogene-driven lung cancers needed far more than what existed.  Our aim is to improve the life expectancy and quality-of-life of people living with oncogene-driven cancers by empowering patients with trusted information, strengthening the patient voice in research and clinical decision making, and accelerating medical research. We collaborate across the global lung cancer community because none of this work can be done alone. Progress happens faster when patients, families, researchers, industry and patient groups help shape it. 

Our first year has been about establishing a charity built on the lived experience, scientific curiosity, and the conviction that better outcomes are possible. Our origin is rooted in real people — their resilience, their advocacy, their will to transform what a diagnosis can mean. It is our community’s faces, their stories and their determination, that shaped the creation of Oncogene Cancer Research and that continues to guide every step we take. 

**Charity Commision  registration number: 1206988** 



## 06 

## **WHO** WE ARE 

## **Our trustees** 


## **Yvonne Diaz Chair and Co-founder** 

Yvonne is a strategic communications professional with 30 years’ experience at global organisations. She’s a mother of twin teen sons and was diagnosed with ALK+ lung cancer in August 2021. She’s a Board Member of ALK Positive Inc and a member of Lung Cancer Europe. Yvonne is a patient rep in Cancer Grand Challenges’ Team CANCAN - a $25m research project, an IASLC STARS Guide and involved in various aspects of advocacy. 


**Jan Clark Secretary and CoFounder** 

Jan brings experience from one of the largest global medical tech companies focused on medical discovery and diagnostics. She is connected to ALK through one of her four daughters who was diagnosed aged 20. Jan frequently represents the care partner voice, attends major industry conferences and leads fundraising campaigns. She was previously a trustee at an ALK+ cancer charity. 



**----- Start of picture text -----**<br>
Helen Tankard<br>Trustee<br>**----- End of picture text -----**<br>


Helen had a long successful career in the medical devices industry, after initially working as a registered nurse in the US and UK. She’s has managed a three-year National Lottery funded project working across various sectors of the NHS, charities and local community groups. She is now a volunteer business consultant for a healthcare support agency in the Algarve, in Portugal where she lives with her husband. Helen was drawn to OCR through a family connection to oncogene cancer. 

## **Our medical advisors** 



Professor Sanjay Popat and Professor Suzanne Turner are founding members of our Medical Advisory Board. They generously give their time, expertise and guidance to support our research strategy and medical goals, helping ensure our work is clinically informed, patient-focused and grounded in scientific excellence. 

## **Medical patient panel,  medical advisors & supporters** 

We are supported by patient advisors with medical and research backgrounds who generously donate their time and expertise, alongside a dedicated network of thoracic oncologists, surgeons, radiotherapists and other specialists who help guide our patient information and work. We are also backed by a wide community of dedicated patient advocates and supporters who contribute to our programmes and initiatives in many ways. 




## **FY 24/25 accomplishments** 

## 07 

## **EMPOWERING** PATIENTS & CARE PARTNERS 

## **Empowering patients with vetted information and community stories of resilience, advocacy and hope.** 



In our foundation year, we established an informative website with a wide range of resources and tools. We also created  a private community for our members and today have over 600 members. 

To help inform, educate and inspire our cancer community and help them feel less alone while navigating a diagnosis, we introduced written patient stories on our website and social media. We also support patients with shared decision-making by providing medically-vetted educational materials on matters like biomarker testing, treatment options, cardiotoxicity, and others. 



After the end of our first financial year, we expanded this work with the launch of the Patient Voices podcast - to help our community feel informed, empowered, and less alone. We’ve also introduced an educational series on surgery in the advanced setting. 


## **CHAMPIONING** ADVOCACY 

## **Amplifying the patient voice in research, policy and access to treatment.** 


In this financial year, we participated in scientific meetings and industry advisory boards, ensuring lived experiences informed research and treatment priorities. We collaborated with advocacy groups, reviewed patient materials for research and pharmaceutical partners, served as research grant reviewers, and contributed to NICE health technology assessments to support patient access to innovative medicines in the UK. We attended and/or spoke at major scientific and industry conferences including BTOG, ASCO, IASLC WCLC and ESMO, as well as patient meetings such as Lung Cancer Europe, ALK Positive Inc and the LUNGevity Hope Summit; none of which were funded by the charity. Our co-founder Yvonne was selected for the IASLC STARS Scholars programme, which included funded attendance & training at IASLC WCLC in San Diego. 




These activities strengthen our ability to influence policy, trial design and patient-centred care, and is supported by ongoing training through IASLC STARS, WECAN, the Research Advocacy Network and other publicly available programmes. 



## 08 

## **ACCELERATING** RESEARCH 





**Funding research to extend the lives of people living with oncogene-driven lung cancers.** 

Prior to formally establishing OCR, our co-founders supported nearly £100,000 in donations to fund the ground-breaking work of the Institute of Cancer Research. 

Over this financial year, we have raised nearly £59,000, which will support two small seed grants to fund innovative projects led by researchers, in line with our research framework and the guidance of our medical advisory board and research partner. 

We actively contribute insight to trials such as Cancer Grand Challenges’ Team CANCAN and the EU’s SPACETIME project, helping to guide research and outcomes. Our co-founders also work to bring clinical trials to the UK, and participate as a member of the 23andMe Lung Cancer Genetics Study, helping to ensure that research reflects patient priorities and informs future studies. 

By attending and speaking at major conferences including BTOG, ESMO, IASLC WCLC and ASCO, we have built vital connections with physician-scientists and researchers, strengthening our role in shaping research that matters to oncogene-driven cancer patients.. 



## **COLLABORATION** WITH OTHERS 

## 09 

Collaboration is central to our work, helping us to amplify the patient voice and drive meaningful change. Our Chair sits on the board of the well-established research charity ALK Positive Inc (US) and we are active members of  Lung Cancer Europe (Switzerland), ensuring patient perspectives shape advocacy, research priorities, directly serving on numerous committees. We have partnered on joint social media campaigns with Young Lung Cancer Initiative and EGFR Resisters, among other one-off collaborations powerful groups like LUNGevity, ALK Positive Inc, Same But Different & others. 

## **FUNDRAISING** & EXPENDITURES 

This year, our supporters helped make our work possible through one-off gifts, regular donations, creative challenges and personal milestones. Support came in many forms: friends ran the 2024 Paris Marathon, ran a 10k, took on a Tough Mudder, completed a Hyrox competition, dedicated birthday fundraisers, and donated wedding and inheritance gifts. A supporter secured a large gift from his employer, and our co-founders donated honoraria, while OCR received honoraria for advisory board participation. Passive donations from our supporters’ use of EasyFundraising also contributed. 

**Title** Our website was generously created pro-bono by Axis Twelve, which also pays for our annual website costs and domain. The majority of the tools we use are free to charities. words Any tools that require payment are covered by directly by our co-founders, not donor funds. In future any costs will be covered via sponsorship. 

More words Importantly, 100% of all funds raised this year will go directly to research. The only cost incurred in this first financial year was membership to Lung Cancer Research, and this was personally funded by a co-founder. 

In our first year, our co-founders also began planning OCR’s inaugural charity ball, which took place on 1 Nov 2025 and generated £35,000 after costs — a remarkable milestone that will be reflected in the next financial year. 

Our efforts in the first financial year have enabled us to raise nearly £59,000 to fund seed grants and accelerate research into oncogene-driven lung cancers. 



## 10 



**Mel - a leading voice for stage 4 EGFR lung cancer** Mel’s story was one of the first we shared, highlighting the challenges of getting diagnosed when you don’t fit the typical profile. We continue to collaborate on Instagram posts, with content regularly reaching six-figure audiences to educate, inspire, and support the lung cancer community. We are proud that Mel has become a prominent public advocate in the UK, appearing on TV, in print, and on speaking platforms. 


**Heidi’s heart attack after curative lung cancer treatment** 

After curative chemo-radiation for inoperable stage 3A lung cancer, Heidi, co-founder of the White Ribbon Project, faced an unexpected second diagnosis six years later: a heart attack. Her story anchored our cardiotoxicity series, highlighting the long-term treatment risks and reaching over 31k views on TikTok & patients actively asking for cardiology monitoring. 

## A FEW OF OUR **COMMUNITY** STORIES 



**Kathrin - redefining who gets lung cancer at 44** Kathrin was a healthy fitness professional when she developed foot pain that landed her in hospital. It was stage 4 ALK+ lung cancer. Her patient story on Instagram achieved over 87k views, 79k views on TikTok and her interview on YouTube achieved over 10k views - helping to people understand that anyone can get lung cancer and there is a lot of hope. 

**Sarah highlights the need to take control of care following her  EGFR lung cancer at 41** 

A healthy marathon runner and filmmaker, Sarah was diagnosed with stage 3A EGFR lung cancer at 41 and sadly progressed to stage 4 within months. Her story highlights the importance of patient empowerment and self-advocacy, including pushing for the FLAURA-2 approach before it was available in the UK. Her story reached over 20k views on Instagram. 



**Steve’s advocacy for surgery for his stage 4 ALK+ lung cancer treatment** 

**Honouring Michael’s legacy and his widow’s search for answers** 

Steve had been told surgery for his stage 4 lung cancer wasn’t an option. He proved them wrong. Steve formed part of our educational surgery series given the absence of patient materials. We developed an informative webpage & downloadable medically-vetted materials and patient stories. 

Michael, a retired military skydiver, died from large cell lung cancer. After his death, his wife discovered an STK11 mutation in his paperwork, raising questions about its clinical significance. This story underscores the importance of understanding biomarkers and shared decisionmaking. 



## **STRUCTURE,** GOVERNANCE & **MANAGEMENT** 

## 11 

Oncogene Cancer Research is a Charitable Incorporated Organisation (CIO). The charity is governed by its constitution, which provides for a minimum of two and a maximum of 12 Trustees. The charity is registered for Gift Aid. 

During the year, the Trustees met formally 10 times. In addition, the co-founders met weekly to progress the charity’s objectives and oversee delivery of its activities. A new Trustee was appointed on 5 March 2024. 

Day-to-day management of the charity is delegated to the co-founders, who also act as Chair, Secretary respectively and jointly as co-Treasurers. Trustees and other volunteers support specific projects such as Gift Aid administration. The charity has no paid staff at present. 

The Trustees are responsible for the overall governance, strategic direction and legal compliance of the charity. The Trustees regularly review risks to the charity and have appropriate controls in place to manage these risks. Conflicts of interest are declared and managed in accordance with the charity’s constitution and good governance practice. 

The charity uses Microsoft Teams to support meetings and the secure sharing and storage of documents and files. The charity has policies in place covering the acceptance and refusal of donations, grants and sponsorships, data privacy and cookies. As the charity grows, the Trustees will continue to review and develop additional policies, where appropriate to the charity’s activities. 


||**REFERENCE &**<br>ADMINISTRATIVE<br>DETAILS|
|---|---|
||Oncogene Cancer Research<br>OCR<br>1206988<br>23 Penzance St.<br>London W11 4QX<br>**Charity name**<br>**Other names the**<br>**charity uses**<br>**Registered charity**<br>**number**<br>**Chairity’s principal**<br>**address**|





12 

## **NAME OF THE** CHARITY TRUSTEE **THAT MANAGED** THE CHARITY 

**Trustee name Office (if any)** Yvonne Diaz Chair; Co-treasurer Jan Clark Secretary; Co-treasurer Helen Tankard 

**Dates acted if not for whole year** 

5 March 2024 

## **DECLARATIONS** 


**The Trustees declare that they have approved the Trustees’ Report as above.** 

Yvonne Diaz **Full names** Chair and Co-Treasurer **Positions** Yvonne Diaz **Signatures** 12 January 2025 **Date** 

Jan Clark Secretary and Co-Treasurer 

Jan Clark 

12 Janauary 2025 



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Oncogene Cancer Research : Accounts 

Page 1 of 10 

# **Oncogene Cancer Research Report and Financial Statements** 

## 05 April 2025 

**Registered No** 1206988 

## **Directors** 

Yvonne Diaz Jan Clark Helen Tankard 

## **Secretary** 

## **Accountants / Auditors** 

Colin Botfield of OMCF Ltd Gallone & Co 14 Newton Place Glasgow G3 7PY 

## **Bankers** 

Metro Bank Southampton Row London 

## **Registered Office** 

23 Penzance Street London London W11 4QX 

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Oncogene Cancer Research : Accounts 

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## **Directors' report** 

The directors present their report and financial statements for the year ended 05 April 2025. 

## **Results and dividends** 

The profit for the year after taxation amounted to £58,288. 

## **Principal activities** 

Charity raising money to fund innovative cancer treatments and research. All funds are unrestricted though raised on basis put to charitable purpose and governance costs. 

The trustees acknowledge their responsibilities for preparing accounts, keeping records and safeguarding assets and acting in interest of the charity and its aims. More information can be found on website. 

These accounts cover the period from foundation and registration 13 February 2024, Future accounting periods will be for year ended 5 April. 

The directors are Trustees. 

Y Diaz Trustee 

## **Directors** 

## **The director(s) shown below have held office during the whole of the period** 

Yvonne Diaz 

Jan Clark 

## **The director(s) shown below joined the company during the period** 

Helen Tankard on 06 April 2024 

## **Political and charitable donations, for the period under review and previous period.** 

None in year but appraising possible projects to support, 

## **Company policy on the employment of disabled persons, for the period under review and previous period.** 

Encouraged 

A full trustees report is available on charity website. The first year was largely devoted to fundraising 

These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies regime and in accordance with the Financial Reporting Standard for Smaller Entities (effective 2008). 

## **On behalf of the board** 

Name: **Yvonne Diaz** 

Status: Director 


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Oncogene Cancer Research : Accounts 

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Status: Director Name: **Helen Tankard** Status: Director Date: 09 January 2026 

Name: **Jan Clark** Status: Director Date: 09 January 2026 



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Oncogene Cancer Research : Accounts 

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## **Profit and loss account** 

for the year ended 05 April 2025 

|Notes<br>**Turnover / revenue**<br>Cost of sales<br>**Gross Profit/(Loss)**<br>Distribution costs<br>Administrative expenses<br>Other Operating Income<br>Profit/(Loss) on disposal of fixed assets<br>**Operating profit/(Loss)**<br>Interest receivable and similar income<br>Interest payable and similar charges<br>**Profit or (loss) on ordinary activities before taxation**<br>Tax on profit on ordinary activities<br>**Profit/(Loss) for the financial year after taxation**<br>Dividends for the period<br>**Profit or (loss) for the financial year**<br>The notes form part of these financial statements|2025<br>£<br>0<br>(0)|
|---|---|
||0<br>(0)<br>(624)<br>58,626<br>(0)|
||**58,002**<br>353<br>(0)|
||**58,355**<br>(67)|
||**58,288**<br>(0)|
||**58,288**|



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Oncogene Cancer Research : Accounts 

Page 5 of 10 

## **Statement of total recognised gains and losses** 

Item Description 2025 £ **Total recognised gains and losses for the period:** 0 

**Total recognised gains and losses for the period:** 

The Statement of Financial Activities for the Period Ended 5 April 2025 is the Profit and Loss Account above. Funds raised and held are unrestricted. 

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Oncogene Cancer Research : Accounts 

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## **Statement of Financial Position** 

As at 05 April 2025 

|Notes<br>**Fixed assets**<br>Intangible assets<br>Property, plant and equipment<br>Financial assets<br>**Total fixed assets**<br>**Current assets**<br>Inventories<br>Debtors<br>Cash at bank and on hand<br>**Total current assets**<br>**Creditors:**amounts falling due within one year<br>2<br>**Net current assets**<br>**Total assets less current liabilities**<br>**Creditors:**amounts falling due after more than one year<br>**Provision for liabilities**<br>**Total net assets (liabilities)**<br>The notes form part of these financial statements|2025<br>£<br>0<br>0<br>0|
|---|---|
||**0**<br>0<br>0<br>58,805|
||**58,805**<br>(517)|
||**58,288**|
||**58,288**<br>(0)<br>(0)|
||**58,288**|



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Oncogene Cancer Research : Accounts 

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## **Statement of Financial Position** 

As at 05 April 2025 continued 

|Notes<br>**Capital and reserves**<br>Called Up Share Capital<br>Share premium<br>Profit and loss account<br>Revaluation reserve<br>Other Reserves:<br>**Shareholders' funds**|2025<br>£<br>0<br>0<br>58,288<br>0<br>0|
|---|---|
||**58,288**|



For the year ending **05 April 2025** the company was entitled to exemption from audit in accordance with sections 475 and 477 of the Companies Act 2006 relating to small companies and no notice has been deposited under Section 476 of the Act. 

The directors acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of accounts. 

These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies' regime and in accordance with the provisions of FRS 102 Section 1A - Small Entities. 

The financial statements were approved by the Board of Directors on: 09 January 2026. 

## **SIGNED ON BEHALF OF THE BOARD BY:** 

Name: **Yvonne Diaz** 

Status: Director Name: **Jan Clark** Status: Director Name: **Helen Tankard** Status: Director 




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Oncogene Cancer Research : Accounts 

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## **1. Accounting policies** 

These accounts are of a Charitable Incorporated Organisation registered with Charity Commission in England and Wales with members which has adopted UK Generally Accepted Acocunting Principles, the historic cost convention and FRS102 Statement of Recommended Practice for charities as the basis for its accounts 

There is no trading turnover. Donations and gift aid received thereon is treated as other operating income 

The company has no fixed assets to depreciate 

Trustees were unpaid in the period under review 

Entity is exempt from Cash Flow statement 

At the year end Shareholders Funds Per the Balance Sheet Statement of Financial Position Were Unrestricted 

The Statement of Financial Activities is the Profit and Loss Account and the Surplus £58,288 is unrestricted. 

Corporation tax is only payable on intrest received 

The CIO does not have a share capital and its members have no personal liability. 

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Oncogene Cancer Research : Accounts 

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## **2. Creditors: amounts falling due within one year** 

||2025|
|---|---|
||£|
|Bank loans and overdrafts:|0|
|Amounts due under finance leases and hire purchase contracts: 0||
|Trade creditors:|0|
|Taxation and social security:|67|
|Accruals and deferred income:|450|
|Other creditors:|0|
|**Total:**|**517**|



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Oncogene Cancer Research : Accounts 

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## **3. Related Party Disclosures** 

The Charitable Incorproated Organisation is under the control of its members but day to day its founders Jan Clark and Chair Yvonne Diaz act in control. 

Jan Clark and Yvonne Diaz incurred some expenditure on IT equipment, web domains and travel on behalf of the C I O and operate from home but are not seeking repayment and these sums are not accrued. No wages were paid in the period nor sought. 

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